airial95

Its done that to me, but because the page is so slow to load that signing in crashes my computer or iPad. Try going to just the main pepsi refresh page, search for pandas and then vote right from the search page. It's super quick and I haven't had any issues that way.

Little tip for the slowing down of the page - just go to the main pepsi refresh page and search pandas. We come right up and you can vote right from the search page. You can then vote for others the same way. It's much much quicker, and usually on my last set of proxy votes I'll comment on our allies pages. It makes life much easier when you're voting for multiple people.

We haven't come right out and told our son much - since he's so young, only 2 1/2. But he's already been able to tell us when he feels "better" or "happy" and when he feels "dark" or "yucky". (His words) We got a clue that he understood something was wrong with him when he was having a particularly rough day and during a violent rage he just collapsed into tears repeating "I want to feel better" That's when we decided to tell him that the medicine he takes every day is doing just that, helping him to get better and feel "happy". Since then, he's never once given us a problem about taking his medicine (we had some rough going getting him to take it at times). And if he's getting ready for bed, he'll even remind us that he hasn't taken it. When we lowered his dose and went to 1x a day, for about 2 weeks we had to deal with him crying in the morning because he wasn't going to get his medicine at that time - only at night! Our bigger challenge was with his sister - who doesn't have PANDAS. She's only 4, and has struggled with why he gets treated differnetly. Even though we try to be firm on behavior and punishments, there are certain OCD things that he does (opening doors for instance - he won't go through if someone else touches it) She doesn't understand why there are things that he ALWAYS gets to do and she never gets a turn. It's kinda funny in a way b/c one of his things is making sure that all the dog poop in the yard is cleaned up. Every day as soon we get home, he can't focus on anything else until my husband takes him out to do it. The other day my daughter was hysterical because she never gets a turn to clean up the dog poop! My hubby and I had a good laugh over how we'll remind them both of their passion for the poop when they're teenagers and complaining about having to do it!

We saw improvement on 100 mg Azith daily (he's only 2 - little guy) after about 12 days. But when we finally saw the difference, it was dramatic. The violent rages were almost completely eliminated - but still dealt with OCD, ADHD and some minor ODD behaviors though.

Congratulations!!! That's wonderful! I now the tears of joy feeling, our day care provider and I both cried the day my son asked me to open his banana! We felt like fools, but it was a great feeling. God bless your remission,my it be permanent!

Karen, I can relate - we get the same treatment from folks, and worse since our little guy is only 2. We get the eye rolling combined with the "he's 2, that's what 2 year olds do", and the comments about how we're not diciplining him properly, he's doing it for attention, etc... One of the worst quarters for us was my own mother! For months she would tell me I was making mountains out of molehills and that he was just fine. Then, they had the kids one weekend and he went into full meltdown mode. Suddenly - my know it all mother was calling me frantically asking what was going on - what should she do. I no longer get attitude from that side of the family anymore. Originally, we tried explaining it as he has OCD and ADHD. But that didn't help any of the attitude because most people think that somehow those things are related to bad parenting too. I think it's just the common misperception of what those disorders are. But now we've approached it similarly to DCmom - it's an autoimmune disorder that makes him more vulnerable to strep and it causes neurological issues. That seems to help too. I wish you luck, and we'll keep you in our prayers. The most important thing to remember is that your kids need you, so what matters most is what you think - not the neighbors or anyone else!

I know what you mean about not knowing what's "normal" for a 2 yr old b/c so many PANDAS symptoms are common for that stage of development. We went through about 4-5 long months of thinking it was just the "terrible twos" before we even thought of something else. And even though I suspected something, my husband thought I was nuts. It was when day care (who's had him since he was 12 weeks old) called us one day mid-rage and very bluntly said - "this is not your kid. We don't know what's going on, but this is definately not the kid we've had the last 2 years". And we were back in the pediatrician the next day. Our pediatrican was fantastic, he's treated several cases already and identified it immediately - even with a negative throat culture. Ironically, at that appointment, our son was out of his mind raging, and the nurse, even before the Dr. came in looked at us and said "Hmmm, I wonder if it could be PANDAS?" Of course, at that moment we had no idea what she was talking about. But it just goes to show how wonderful it is to have a good network of people around you who pay attention and care about your kids at school and the Dr's. We worried about going to a single dr practice - availiability, getting appointments, etc.. but it has been the biggest blessing, because he and all of his staff know my kids - really know my kids that even he was able to see a drastic change and not look at me like I was a complete loon. Now - since the diagnosis, I know he looks at me like a complete loon because any sneeze, sniffle, anything with either of the kids and I'm on the phone/email or in is office in a heartbeat!

Thanks for the input. My son does have a PANDAS diagnosis. We actually have a great pediatrician incovlved that was the one to recognize it. He deals mostly with the OCD, ADHD and ODD - so we've escaped any ticcing - thus far. He's been on abx for just about 4 months now, and the results have been very promising. WE still deal mostly with the OCD - and of course some days are better than others. But I started a log on his behaviors/symptoms about 3 weeks after he started the abx (I wish I had thought of it sooner!!) We even have the teachers at school tracking things for us. IT's really helped us see how he's progressing. This blinking thing has been new though, and it seems like it happens when he's already anxious about something (new situation, too many people, etc...) It sounds to me like that might have something to do with it. With him being so young, it has been hard to seperate what's PANDAS and what's not. We've actually got him back to a point where most people would just find him a challenging, tempermental but normal child. However, we still remember the little boy we had 6 months ago, and his temperment hasn't fully recovered yet. But we're getting there!! I just feel like I'm looking for sypmtoms everywhere, even where there may be none! Thanks!

Thought I'd end the evening with a quick laugh for everyone. The running joke in our family on our facebook pages is that the Save the Lemurs cause is in the top 10 for 50k. While I'm sure lemurs are wonderful creatures, I'd much rather see the grant go towards helping people than some obscure mammal. Either way, I've been wondering just what exactly a bunch of lemurs would do with $50k...I guess I found out: I wonder if those wings are spicy?

Just a reminder about the recall on all of the liquid kids tylenol and motrin - if they're on the chewables I don't think it's affected. I'd call the pediatrician, ours takes calls through his service in the evenings - but that's just me, and I tend to be a bit crazy when it comes to my kids catching ANYTHING since PANDAS came into our lives. My little guy had a fever while on azith - had been on for about 6 wks at that point - and the dr recommended just what everyone has said - tylenol and/or motrin for the fever, lots of rest and lots of fluids. Since he was on continuous abx (still is), he said if it's bacterial that should take care of it, but it's most likely viral and will just need TLC and time. Surprisingly, we expected a major setback but didn't really get one - although, he was still just coming down from the height of his last exacerbation sp things were still a tad bit crazy. Hope he feels better soon!

Thanks for asking this question - I've been wondering the same thing because it seems like we see alot of posts of parents whose kids get worse, sometimes much worse, after IVIG. My understanding is that it's temporary, but the volume of those posts is somewhat frightening. We've been on abx for about 4 months and our little guy is probably about 80% back - with a few setbacks when he's exposed to strep, but they only last a few days and he's back to where we left off. We're at the point where progress is slowing and we're looking at what to do next. And IVIG is personally something that i'm still a bit scared of. I've told myself that the reason we see more getting worse before better posts with the IVIG vs. the "everything is fantastic" post IVIG threads is likely because most of us spend more time on here when our kids are doing poorly, than when they're doing better. I know I'm guilty of that...

Thanks, I just feel like I'm a crazy person sometimes, looking for symptoms that may or may not be there! At least I'm not that crazy then!

Thanks Vickie, I have several proxy votes and my hubby left town for the field for a week so now I have his (and his proxy votes) to do too. I can handle it, I've just been trying to break it upnthrought the day and various posting times when I can. I haven't tried voting through the profile page, that might help things along. Thanks! Sandra

Last night when I was trying to vote it was giving me trouble, very slow, freezing up when I tried to log in. Tried using my laptop and iPad thinking it might be my desktop but the results were the same. It took me forever to get all my votes in, and my proxies. (but ibstuck with it!!). When I tried to vote this morning I'm having the same issue. Anyone else having this problem?

My 2 1/2 yr old PANDAS son has dealt primarily with OCD, ADHD, and ODD during his journey so far. We've been very lucky that we haven't had to deal with the tic aspect of it - yet. I say yet, because I've been noticing something, but i'm not sure if you would identify it as a tic or just something weird 2 year olds do. (a common question in our family!) He shuts his eyes very tightly and moves his head to the side. It's like a blink - but longer, but not quite a grimace. I'd compare it to the type of face one would make if they were swallowing something unpleasant - but far less animated. I noticed it for the first time in church last week, and he was having a bad morning, with sound hypersensitivity and ADHD off the charts. I kept an eye on it, and notcied it stopped about an hour or so after church. I made a mental note to keep an eye on him, but also thought he may have been continuing to do it since he knew it was getting my attention. I've kept an eye on him all week - I didn't ask the teachers to specifically look out for that last week, because I wanted an objective opinion of it, and they always report new behaviors. This is obvious enough that if was doing it at school they'd report it. He was fine (although "fine" is a relative term with PANDAS). On Saturday morning, we went to an exercise class and then the park with his sister, and I noticed him doing it again in the stroller during the walking class. He continued to do it at the park (but not as often), and by the time we stopped for lunch it stopped. He had a great day at the class and park, with only a little anxiety about the bouncy house (he loves them, but for some reason it was "wrong" that day.) On Sunday morning, it reappered again at a birthday party, but only a few times and then nothing. He was suprisingly well behaved at the party too - although a little OCD constantly picking up toys after the other children (but happily! He didn't get angry when they pulled the toys back out - just went along behind them picking them up again.) It doesn't happen in rapid succession, once a minute would probably be an eggagerated description. But it's often enough that it has gotten our attention. What's odd to me is that it only has happened these 3 times, in the morning, and it stops. Is this normal for a tic? Can it come and go like that or is this just something quirky (our daughter did this when she was about 20 months or so - my husband was convinced she was having some sort of seizure - sure enough, she was just doing it because it got daddy's attention. The first time he didn't react to it was the last time it happened!) I've been careful not to make too big of a notice of it, in case it is just attention related. But I thought that tics were more persistent - didn't come and go like that. All three times it happened we were out of the house, could that be a factor? We've not had to deal with this symptom so far so I'm not sure how to approach this. Any advice would be helpful!

I dumped a huge load of votes on skip program....but check out our rank 23 competitor.....LOTS of votes from Skip program. Well we're ahead of them now!

Just saw one of my votes bump us to 23! Pretty cool! We were 24when I logged on and 23 after my vote. Yippee

We've been on constant daily doses of abx for 4 months now with great results. He flares when exposed to strep, but it usually lasts only 3 days or so. He's on a low dose that the dr will increase during exposure. Our dr is less concerned with resistance than with the intestinal side effects so we have bi-weekly phone/email updates and sees us as needed. We haven't had to go IVIG or anything more drastic yet, but our dr has indicated that his abx treatment will be long term, several months at least. Not sure if this helps, but hopefully you'll find something that helps.

We've had a rough 48 hours or so with our little guy, couldn't quite figure it out - until this morning, I get a text from his best friends dad - his son is positive for strep! Knowing our issue (and being the devout Pepsi voter/promoter that he is) - he texted me from the Dr's office as soon as the throat culture came up postive. This is his 2nd strep infection in just over a month (and my daughter's best friend was our third exposure). I feel like when he has a bad couple of days at school I should tell the teacher that someone else must be sick - but I know that'll make me more nuts than I already am! I don't remember strep being this prevelant the last couple of years - or does it just seem that way since I'm constantly on edge and on the look out now??

I just contacted the number 1 Am and Pm radian shows here in Tampa asking if they could give us a plug. They're usually pretty cool with this stuff so cross your fingers and hope!!

Our son has had exposure exacerbations twice in the last couple of months. We were nervous because he seemed to switch so quickly that we thought we were in for a long ride back to where he was pre-exposure. But we were really shocked that both times it was only 2-3 days and then he improved significatnly!

Have you contacted the school board? Or even better, you local county comission or state representatives? This type of problem tends to resonate with them and often they'll be willing to get involved and help. Heck, I wouldn't even rule out going to the press over the whole "solitary confienment" thing. It's the type of thing that will get the public's attention and justifiably their outrage. Obviously the media would be a last ditch effort - but it's something to consider!

My husband took an active interest after our dx, and did lots of initial research, but he thinks I've become too consumed by it. Well - duh! I had a beautiful little boy, perfect manners, very mellow and he just one day woke up the spawn of all evil! Of course I'm consumed. It became running fights in our house as to how much I was focusing on my son and his issues over everything else. But there has been a change lately! Ironically, since the Pepsi Refresh campaign started, my husband seems to have finally gotten on the bandwagon. He was forwarding the message to vote on his facebook, via email, grudgingly mostly because he knew he'd face ###### at the end of the day if he didn't. But as he spread the word, and more people started asking him questions, he seemed to have a spark lit up. And now he's the one making sure I voted, posted to FB, etc. The other day he even called me and asked if we had a sorority list serv or fan page that I could post to - that would be a good place for support. Hopefully his new found support lasts long after WE WIN the 50k!! And loved the joke by the way!!!

Carol, Where in Florida are you? I'm in the Tampa area, and our 2 1/2 yr old has pandas, primarily with OCD and ADHD. Our pediatrician, while not an "expert" has treated several pandas cases and has had our son on azith foxing on almost 4 mos now. He did that even though the rapid strep test came back negative - based primarily on the behavior. He'll be the first to admit that there's not enough known about pandas but he's a believer and understands that long term abx are par for the course.

I'm sorry,but I haven't read anything but the initial post and am completely appalled that any school would treat a child that way. If you don't mind my asking, what school district is this? It seems very archaic. My biggest fear is for when my Pandas som starts school.